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♥Meet our Representatives

♥Newsletter

♥Kids for CRY ♥♥♥♥♥♥♥♥Eleanor’s Interview

♥Puzzles

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♥Raising Awareness

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Issue No. 15 September / October 1998

CCARDIAC

RRISK in the

YYOUNG

BI-MONTHLY UPDATE

MEET OUR REPRESENTATIVES

IN THE SOUTHWEST - IT`S ROBERT CRABB

I live with my wife and 2 children in North Devon and am head of Sport and Recreation for

North Devon District Council. In our area much of the sport is informal and based around

the famous surfing beaches. However I also look after everything from Leisure Centres

and Swimming Pools to beach lifeguards whilst my wife does intensive care

nursing in the local district hospital.

I have always been physically active, which used to mean playing club rugby and

swimming or playing water polo for the county but

now is more likely to mean walking the family dogs

- which is a great relaxation while the children look

after the rest of our menagerie of rabbits, guinea

pigs, cat, chickens and a cockerel who always

makes a racket when I’m on the phone to Alison!

I first encountered a young sudden cardiac death

when a local athlete died whilst playing rugby 9

years ago. Little did I realise that I would be in

hospital myself some 5 years later with a heart that

refused to beat in the right rhythm. Fortunately I

was referred to St George’s and am now in very

good health thanks to the attention I received. I

can again lead an active but careful life facilitated

by the two glasses of red wine I drink every

evening (for medicinal purposes only you under-

stand!) Having gone through the agonising time of

not knowing what was wrong, waiting for results,

and also wondering if my children had inherited a

potentially deadly disease, I do understand the

impact such an event has on the whole family and

also how swiftly it can strike.

After my own experience I wanted to know more about cardiac abnormalities that affected

fit and healthy young people and I was particularly interested in the possibility of screening

athletes. CRY’S dedicated goals of raising awareness of cardiac risks in the under 35’s

attracted my attention because of my direct link with active youngsters. My own teacher

training also predisposed me to want very much to do something proactive to help and do

something about it.

Due to pressure of work I have not had the time I would like to spend on lobbying and

raising awareness - something I consider an essential feature of CRY’S programme. If

there is anyone out there who would like to help me cover the SouthWest please let me

know! CRY and I, need you!!

NEWSLETTER SEPTEMBER / OCTOBER 1998

In October we had perhaps one of the most significant events in our short but robust

history. This was the CRY Press Conference by the Loyley family during the Inquest at

Bath into the sudden death of Anna immediately after she crossed the finishing line in

the Bath ½ Marathon. Anna's Dad Phil refused to accept the circumstances until he had

fully investigated, and in the course of his appeal for information found about CRY.

Anna's Inquest aroused an extraordinary amount of interest and media coverage and

most unusually extended to two days of detailed evidence - including 55 minutes from

Professor McKenna - concluding with the Coroner's recommendation that sporting

events must in future consider endorsing pre-competition screening. It was attended by

a representative from the International Amateur Athletics Federation who have taken a

very close interest and are meeting with Phil Loyley to discuss the possibility of having

the French rules implemented throughout the 269 affiliated branches, including the

British Amateur Athletics Federation.

These rules would cost only a few hundred pounds more than at present but would be

inherently safer. It is a chilling thought that if Anna had died on the line in her next race,

in Paris, and not in Bath, she might well have been saved. Although they were with

Anna within seconds the St. John' Ambulance team were unable to properly administer

the defibrillator they attempted to use. It had still not been thought necessary to employ

a full paramedic team and ambulance this year, in spite of the fact that last year a 30

year old man had also died by the finishing line of cardiac arrest. The difference in cost

would have been £50. Professor McKenna said "to call the care (she received) sub-

optimal would be a charitable way to describe it." As many of our families involved in

sport will attest, cardiac deaths do happen and we believe basic precautions should be

taken. Raising awareness is the key, and the Loyley family are determined that

changes must be made. A packed Press Conference at the Bath Hilton featured a

deposition from Phil, Professor Bill McKenna and myself, and 3 CRY families who gave

interviews corroborating our campaign message - that attention must now be paid to

preventing these young sudden deaths which can no longer be dismissed as very rare.

Consequent interviews on BBC West, Harlech and Radio 5 Live, coupled with Caroline

Gard's interviews on BBC East and Anglia, and an article in The Mirror has led to

another busy time for Brochure requests and great interest in details of our ECG

programme.

On the home front, both Kenny Bowen and Adrian Woodhead have maintained their

momentum. Kenny has now raised £30,475 from his appeal to Trusts, including a

£10,000 grant for development of our counselling programme, and donations for two

more "Roving" ECG machines. Adrian has concluded his personal mission of writing to

all M.P's (over 600 of them!) with details of our aims.

With such support as we get from all of you, no wonder our message is being heard!

ELEANOR’SINTERVIEW

WITH

TONY MASONCRY`S newTRUSTEE

Eleanor: What does being an actuary involve?

Tony: An actuary is a financial problem solver. We study mathematics, statistics

and economics and by analysing what has happened in the past we predict what

will happen in the future. Most actuaries either work for insurance companies

calculating the premium rates for life

assurance policies and assessing

the reserves needed or work as

consultants advising companies on

their pension schemes. I work as a consultant and my specialist area is medical

negligence.

Eleanor: Why did you decide to become a Trustee for CRY?

Tony: I was involved in a fund raising weekend for CRY at Sutton Tennis Club and

became interested in the charity after speaking with Alison Cox. I thought that my

actuarial and business background may be of some use to CRY, particularly in the

areas of research and raising awareness amongst the medical profession. I was

also reminded of the death whilst I was at school of a 16 year old boy who died in

his sleep during the night after I had played table tennis against him and I felt I

wanted to help.

Eleanor: When did you first hear about Sudden Death Syndrome?

Tony: Probably after reading about

the death of Terry Yorath’s son, but I

have only got to understand the full

extent of the dangers as a result of attending the CRY weekend earlier this year.

I have only got to understand the full

extent of the dangers as a result of attending

the CRY weekend earlier this year

I suspect that most doctors are aware

of the condition but that too many do not

take it seriously enough

Eleanor: Are there accurate statistics on how many apparently fit and healthy

young people die suddenly

each year?

Tony Unfortunately not.

Although there are statistics on how many young people die the cause of death

is not always investigated thoroughly and may be recorded as an accident.

Eleanor: Do you think the NHS are fully aware of the condition?

Tony I suspect that most doctors are aware of the condition but that too many

do not take it seriously enough.

Eleanor: Do you think they could

do more to help?

Tony I am certain that more can be

done to educate GP’s and other doctors about the symptoms of SDS and the

dangers of misdiagnosis. Any measure, such as a national screening pro-

gramme for young sportsmen and women, is something that should be provided

by the NHS and not be something that has to rely on charity.

I am certain that more can be done to educate

GPs and other doctors about the symptoms of

SDS and the dangers of misdiagnosis

Although there are statistics on how

many young people die, the cause of death

is not always investigated thoroughly and may

be recorded as an accident.

WHO BROKE THE WINDOW?

Photo-CallCRY`S

echocardiographer

Annette Jones

sharing

. . . . . . . .

with Ameri,

Alison`s

parrot, at our

recent Nottingham

Screening Weekend.

Teacher: every

thing you do i

s wrong. How c

an you expect

to

get a job when

you leave sch

ool if everyth

ing you say is

inaccu-

rate? Pupil: W

ell sir I m goin

g to be a TV w

eatherman!

Teacher:

Tell me Ambe

r,is the world

flat or round

?

Amber: Neith

er miss, my

mum`s always

telling me it

s crooked!

Smallboy; Please miss would you tell me off forsomething i didn`t do? Teacher: Of course not,Small boyOh good! Then i can tell you i haven`t done myhome work!Amiddle aged womanwas on her way to theshops when she saw asmall boy leaning against thewall, smoking a cigar and swig-ging a bottle of whisky. The woman

was appalled by this andrushed over to the boy anddemanded : Why aren t you atschool at this time of the day?

At school? I m only

Teacher:if i were to

ask you to add9,731 to 232 and

then halve it, what do you think youwould get? Simon: The wrong

answer sir!

PETER MCDOWALL CLIMBED 11 MUNROES FOR CRY AND RAISED £379.65

At the end of August I returned from Scotland having done some sponsored hiking in

the highlands for a couple of weeks, or more specifically climbing Munroes, moun-

tains in Scotland over 3,000 feet.Previous expeditions to Scotland had given us good

weather, but this year the weather was terrible, even for Scotland.

The weather started off quite well and on the first hike the weather was actually quite

pleasant, but by the time we were halfway up our second climb, Schiehallion, the

weather had turned foul, and we found ourselves caught in high winds (we guessed

about 40m.p.h.) and driving rain. Visibility was also poor, but we soon became

accustomed to this over the course of our hikes. Out of our two weeks climbing we

only had one day where the weather was actually hot, so much so that we even felt

the need for sunscreen. However the rest of the climbs were more of an ordeal, pre-

senting us with incredibly high winds, enough to tear you off the rocks, and we even

got caught right in the middle of a thunderstorm, which was slightly worrying as one

of our number was carrying the graphite leki poles, which are perfect conductors of

electricity.

At the end of our two week trip we returned with a slightly depressing set of photos.

Only a few of which actually provided views, as most of the time we were stuck in the

huge banks of cloud which seemed to roam the Scottish peaks permanently. We

also returned with a large number of summit photos which all looked identical; a few

soaking hikers huddled around a windswept OS trig-point with a backdrop of dense

cloud. And because of this we’ve been accused of taking multiple photos on a single

summit from different angles (which isn’t true I hasten to add.) However, at the end

of it all I would definitely say it was worth it. Each climb is a brilliant experience,

completely individual and unforgettable.

CCaann yyoouu ffiinndd tthheessee

wwoorrddss??

TEACHER

CLASS-

ROOM

GYM

SPORT

MATHS

FRENCH

READING

NIGEL FOSTER

MEMORIAL FUND

Southlands School in Lymington,

Hampshire held a Mini Music

Festival in Nigel`s memory and have

sent us a wonderful cheque for

£105.00

CRAIG RAMPTON

MEMORIAL FUND

A non-uniform day at Saxon Shore Infant

School in Portsmouth raised £165.00 for

their chosen charity CRY. A fun day

resulted in a brilliant donation

Andrew Pronger and Neil Thomas

wanted to help CRY after they heard

of the Commando Challenge so they

decided to run in the Hastings half

Marathon and have sent us a

fantastic cheque for £204.00

Mrs Richardson from Merchant

Taylors` School for Girls has sent

us a great cheque for £90.00. The

money was raised last term by the

pupils of form 3R

OUR FUNDRAISERS

From left to right Sandra, Maralyn and Chris receiving a cheque from the directors of Kvaerner Redpath

Kvaerner Redpath has donated £500.00 to CRY at the initiave of Alan Wilkinson (Sandra`s husband)

IAN BOWEN MEMORIAL FUND

Julie and Tony`s Bowling

Day raised £524.00

Despite the dodgy weather, and partici-

pants having to time their bowling in

between showers - the day was a great

success, due to the terrific CRY team of

Roy and Gill,Julie and Tony and Sheila

Clarke CRY`S Distribution Manager who

also attended the event with our

merchandise. Special thanks to Jan and

John at The Weary Traveller for hosting

the event and Interlink Express for

sponsoring the Trophy. They have also

offered to do the same for us next year

Thank You so much!

IN MEMORY OF ANDREW BALL

IN MEMORY OF DAVID CROSSTHE LADIES LEISURE GROUP

HAVE RAISED £1,000.00

Eileen Howard & Betty

Crawford (secretary)

Margaret Johnson Chairman

& outstanding fundraiser

Joyce Pickering with Jose LeeSelling Raffle Tickets

for 29 donated prizes

Iris and Jo Cross - preparing! Margaret Johnson

and Wendy Martin

Well Done! What a Fantastic turnout!Betty & Scone, Jo &

Arlene with Eileen

Ann Brown (Treasurer)

The Ladies Leisure Group, St John`s Church, Wideopen have been busy for CRY for the last

12 months organising Coffee Mornings and Raffles.The collage below shows members at two

different Fundraisings. “At the `Taste of Devon` coffee Morning 130 Scones, 9lbs of clotted

cream and 12lbs of strawberries went down well with everyone!! Thank goodness Jo can now

stop worrying about running out of clotted cream at the event - or whether another batch of

scones should be made for the freezer!” writes Charlie Cross with relief!

OUR FUNDRAISERS

On a grotty rainy Sunday the charity football

match in Kevin`s memory raised a grand and

unexpected total of £232.00. Everybody enjoyed

themselves and there were plenty of smiles

around despite the

weather! 2 collecting

boxes from Jubilee Hall

contained £40.53, and

earlier in the month Brian

Collier held a sponsored

Power Boat Race at

Alton Broad and managed to raise £74.30 So The

Sayers had an excellent day raising a total of

£346.83. We then received another cheque for

£260.20 from Jex Rangers in memory of Kevin

bringing the grand total to a brilliant £607.03.

IN MEMORY OF KEVIN SAYER

KEVIN SAYER

TONY & EVY

IN MEMORY OF

IAN BOWEN

Debby Berry who works for Redcar

and Cleveland Council organised a

Raffle in aid of CRY and sent us a

super donation of £101.00 – and at

the initiative of Katy Lee, Trinity

Computer Services have sent us a

cheque for £25.00

ANDREW BALL

MEMORIAL FUND

Roy Ball has emptied out his Collecting

Boxes again – the proceeds being £22.50.

Also another cheque for £25.50 from the

Bric-a-Brack store at the Summer fair and

finally Sheila Sullivan has sent us

£63.50 in Donations adding a further

£111.50 to Andrew`s Fund

JASON ERICS MEMORIAL FUND Linda and Nick (Jason`s Uncle and Aunt) Have sent us a brilliant cheque for £100.00,

with a Golfing Day and a Raffle being planned for the future!

IN MEMORY OF NIGEL FOSTER GEC Marconi in Portsmouth (Mike`s old Company)have sent us a great donation for

£100.00 raised from their Collecting Boxes

ANDY GARD MEMORIAL FUND

THE FRINTON DANCE RAISED £3,200

The band Crying Out Loud getting into their stride Keep those elbows in - theres not much space

Dick and Doreen dancing the night away Cathy Gard & Stav - enjoying the action Cheers!

Jeanne and Alan adding some backing vocals Who said the twist would ever go out of fashion

Is there any way through to the bar this way ? Four happy revellers later that evening

SCREENING OF ELITE ROVER JUNIOR

TENNIS PLAYERS AT NOTTINGHAM

Where did you say the Aorta was?

Asks LTA Rover Coach Lawrence Kelly

Me? - Tired? Cardiologists never get tired! Mike Foster and Harry Hindle

wondering where Nottingham`s Forest is!

Where did you say your wallet was?What`s up Doc?

LTA Medical Officer Dr Mike Turner telling his

Rover Kids it doesn`t hurt as long as you smile

PHILIP ABRAHAM MEMORIAL FUND

THE TIGERS CHILDRENS MOTORCYCLE

DISPLAY TEAM DONATE £1,000

The Tigers are a very hardworking

bunch, and travel all around the coun-

try putting on wonderful displays of

precision riding, they first found out

about CRY when doing a display at a

fete in June 96 organised by Mary

Abraham. Helping all sorts of chil-

dren`s charitys The Tigers have donat-

ed to CRY the fantastic sum of £1,000.

The Netley & Hamble Band Mary Abraham`s band

Look Mum no hands! Blazing Saddles?

Trust us - we`re the Tigers All reved up and raring to go!

We have Lift Off!Wanna hear me growl?

HELP!!

Having just received an analysis of our accounts it would appear stringent measures must be

urgently applied to ensure the stability of our office.

The success of our ECG programme (12 centres to be launched in 1999) has put great pressure on

office costs. We now have a wait list for those to be opened in 2000. A great deal of money has

been raised for this programme but it is ringfenced, and can only be used for this specific purpose.

Meanwhile we have to pay careful attention to our general administration and aims .

At the same time as coping with our screening programme which includes our ECG programme,

our Mobile Screening programme and works supporting Professor McKenna’s research programme

at St. George’s Hospital Medical School - the CRY office

1) raises awareness icluding the issue of our free information Brochure. There seems to be an

insatiable demand for our brochure for which we have received commendations from a full spec-

trum of applicants including M.P’s, journalists, doctors, nurses, the lay public and most importantly

families who have suffered from a tragedy. This mushrooming of interest has vastly increased our

production costs. Since January we have spent over £20,000 on this alone. In the last month,

since the Loyley’s Press Conference we have spent £90.00 on purchasing 20 reams (10,000

sheets) of paper!

We now need someone to work part time on collating these Brochures.

2) offers counsel and support which includes producing a free Counselling Leaflet for which

requests are often 100 at a time

In an effort to cope cost-effectively, we have restructured staffing by reducing secretarial costs and

welcoming offers of voluntary help for manning the phone and doing general office tasks.

However we must now prune back even more aggressively and one of the possible casualties of

our current crisis is likely to be the CRY Dinner which for the last two years has been heavily

subsidised.

For all of you out their in the field who fundraise for us enabling us to continue with our “raising

awareness campaign” and “offering of counselling and support” in the current form a big thank you.

Incidentally, it has been suggested that we charge for our publications. I can tell you, we have tried

this - it doesn’t work and so is not a viable option.

I know people are often not clear where their fundraising money goes. There is an apprehension it

could be squandered. So frequently charities get such terrible press in this regard.

CRY uses all the voluntary help it can get for non-specific jobs. However we have to pay the

market rate to get a Secretary. We also have Tony and Mike whose remunerations are lower than

in their previous jobs - such is their commitment. I am personally earning less than I was in 1985

in the commercial sector! There are currently no office costs apart from heating and lighting.

I hope that this answers some of your questions including those you might want to ask but feel

would be inappropriate to do so.

We are enormously grateful to those of you who fund our office directly for the above campaign

aims. Without your support we would very clearly, and probably very quickly, just simply cease to

exist!

RAISING AWARENESS

The Daily Mirror 16.10.98 With Permission

RAISING AWARENESS

The Bath Chronicle 16.10.98 With Permission

RAISING AWARENESS

* BEWARE *COLLECTING

BOXES

ATTRACT

THIEVES!

* BEWARE *COLLECTING

BOXES

ATTRACT

THIEVES!

The Dorset Evening Echo 07.10.98 With Permission

Bulletin Board

LLuuccii’’ss LLoocckkeett ffoorr CCRRYYLuci has designed, especially for CRY, a superb

sterling silver (or 9 carat gold) locket which

opens to hold two photos. The silver chain can

be any length up to a maximum of 20 inches,

and the locket can be personalised with the

addition of any initial.

The cost, including post, packing & insurance is £75,00 and order forms are available from the

office.Gold initial and clasp are available for the additional charge of £15.00 All lockets are made

individually, hallmarked and engraved on the back with CRY and our ECG line.

Would you like to run in

The London Marathon for CRY?

if so Please contact Mike Foster

phone / fax 01329 231734

Granville Staff (CRY`S North West Representative)

A Special thank you to Dennis Merchantwho with the help of his neighbour Raj

Puri got a beautiful pentium computer donated to the office

ROY BALL

A Special ThankYou to Roy Ball

who in 1999 is

stepping down as

CRY`S

Representative in

the Midlands.Roy

has been a stalward supporter from the

inception of CRY and we are most

grateful for his ideas and fundraising

efforts on CRY`S behalf. Roy will still

be there for anyone who would like to

contact him on Talking Point and be

available to help us in any way he can.

ROY BALL

Bernard RissikIt is with great sadness that we have to report the recent

sudden death of Bernard Rissik one of our Trustees, and wouldlike to extend our deepest sympathy to his widow, Judy.

RAISING AWARENESS

The Evening Gazette 16.09.98 With Permission

THE IAN BOWEN MEMORIAL FUND HAS SO FAR RAISED NEARLY

£13,000 TOWARDS OUR CRY ECG TESTING PROGRAMME FUND

RAISING AWARENESS

The Frinton and Walton Gazette With Permission

RAISING AWARENESS

The Bath Chronicle 16.10.98 With Permission

The Daily Telegraph 17.10.98 With Permission

The CRY Press Conference held during Anna Loyley`s Inquest

(L to R) Lawyer Richard Lazar, Anna`s fiancee Nick Raggett, Alison Cox, Phil Loyley & Proffessor McKenna

RAISING AWARENESS

The Lancashire Evening Telegraph 14.10.98 With Permission

THE FAMILIES OF DAVID

STAFF AND NEIL WICKERS

HAVE SO FAR RAISED

OVER £10,000 TOWARDS

OUR CRY ECG TESTING

PROGRAMME IN MEMORY

OF THEIR SONS

RAISING AWARENESS

With Permission Dream UK

Poem